New blood test

Hi been sulking for a while after I was told I was in a grey area.  I have tried to switch off from all of it except my body and mind still hurt.  I am sorry to say that I have not kept up with the posts regularly but I am really pleased that some of you have had surgery and are coming out the other end, well done. 

Latest blood tests are corrected calcium 2.71, PTH 38 and vit d 61.  I was told that I needed to get me vit d to 100 to see what would happen to calcium levels so I`ve been taking 2400 units per day since that appointment beginning of November. Does this latest test mean that I have hyperparathyroidism or still suggesting vit d deficiency?  Any ideas would be most helpful, still really struggling with symptoms. Mel x

I think you need to sack your Dr is this your GP or Endo playing silly games ?

With your levels you should have a diagnosis and be having scans by now. If your corrected calcium is that high then serum will be higher no wonder you feel crap.

Nelly

Hi Nelly, A long story but endo said that under no circumstances did I have HPT just a vit d deficiency. I requested via GP a second opinion to a surgeon who said I was in a grey area and if I increased my vit d supplements it would help him to clarify. 

I`ve had scans, the nuclear one came back negative but did highlight a area which enabled them to ultrasound the same area.  The report states "I cannot convincingly demonstrate a parathyroid adenoma on todays scan.  There are a couple of tiny low echogenicity nodules lying caudal to the lower pole of the left lobe of thyroid.  The larger of these only measures 4 x 3 axially. They are most likely to be tiny benign lymph nodes, but the larger may conceivably be a tiny parathyroid adenoma.  

I will collect the latest blood report from the Gp`s soon, I asked the receptionist for the levels when she called to ask me to make an appointment. My corrected calcium is always higher than serum normally, someone explained this on the forum but I cant remember why it happens and what it means.  

Hope you have a restful Christmas x

I would still sack your Endotwat and work on the surgeon, is he an experienced endo/para surgeon ?

Your vitd at 61 is reasonable and your calcium and pth are high indicating you do have a problem and its not vitd deficiency. My vitd pre op ranged from 12-40 and although they would have liked it higher it was never suggested it was the cause of my high cal and pth.

The problem with taking high doses of vitd is the risk of calcium levels increasing and making you feel worse.

Hopefully your surgeon will see sense very soon, if not I would sack him as well

I hope you can enjoy Christmas despite feeling so rough

Nelly

Holy high PTH, Batman!! Find a surgeon and get this taken care of!! What idiot of a doctor would tell you to increase your vitamin D to 100 to see what would happen to already high calcium and PTH levels?!! I fully agree with Nelly, ditch that idiot and find a surgeon! Your levels are WAY too high! When your calcium and PTH are that high, your vitamin D SHOULD be low! Raising your vitamin D could possibly raise your calcium even higher! If I were you, I would stop taking the vitamin D. When my PTH was first round to be high, my calcium was high/normal, and my vitamin D was low. My doctors also diagnosed me with vitamin D deficiency. After reading Dr. Norman's website, I told my doctors they were wrong. They disagreed. I stopped taking the vitamin D without their approval. A couple of years later, I had 2 parathyroid tumors removed!

Please find a surgeon. Don't waste your time with this endo idiot!

Audrey

Hi Mel

Can you just remind me of where you live?

And what were your serum calcium and albumin when your corrected calcium came back as 2.71?

Love from Tigerlily xxxx

Hi I live in Derbyshire. 

I will collect my blood level report on Monday morning from my doctors surgery, haven't really been able to co-ordinate myself to collect it yet.  I've been so dizzy for the last few weeks and it seems to be getting worse, the bone pain keeps me awake and I feel a wreck. I will post my serum calcium and albumin on Monday, these are usually lower than corrected, for some reason but cannot remember why.

I`m really going to push for help in 2015 as I cant carry on this way. 

Hope you are having a lovely Christmas time x

Bless you, Mel - so glad to hear you're going to push for more help in the New Year!
I'm sure we on the forum will help you as much as we can.

Do I recall correctly that you were going to see Robert Hardy over in Liverpool?

I look forward to seeing your blood test results on Monday. If you have a low serum albumin level, that will be why your serum calcium is corrected upwards. Albumin stores some calcium, and that needs to be taken into consideration when calculating calcium levels, especially if your albumin is low.

My albumin is/was always high, so my serum calcium was always corrected downwards; the corrected calcium was then "in range" (even if at the top of the range) and "therefore, your calcium cannot be regarded as high" is what the medical professionals told me. But I've recently had 3 x PTH adenoma removed, so I'm afraid they were wrong.

They also tried to tell me that my high-in-the-range calcium, with a high-in-the-range PTH at the same blood draw, was due to a Vitamin D deficiency (my Vit D was as low as 16), but if it had been hyperparathyroidism secondary to Vit D deficiency, then my calcium would have been LOW and not as high as it was (my serum calcium peaked at 2.73 and my PTH peaked at 12).

But your corrected calcium of 2.71 is really quite high. And if they don't think it is due to a parathyroid adenoma, then I would be asking what they think is causing the calcium to be so high.

It really does sound to me as though you have primary hyperparathyroidism, but your medical team is unable to clearly locate an adenoma and is perhaps not experienced enough to operate without clear scans showing them where to look.

Have a rest about all this tomorrow though, Mel, and let us know what the blood test results show early next week.

Love from Tigerlily xxxx

Hi Mel

It does seem as though you are being mismanaged here. Your Vit D seems pretty good - mine isn't that high after surgery! I also have lower albumin levels which raise the corrected calcium and always have and this was something that worked against me following surgery when the number crunchers said my levels were normal and I certainly didn't feel that way. I can't see why your medical experts think that your PTH is perfectly fine when it's obviously not. They seem to only want to look at your calcium. I too was told initially that my highest (corrected) level of 2.79 wasn't very high: it was Tigerlily that said 'hang on, it actually is high'! It stayed at 2.79 for months before creeping up and up and up and was 2.98 on the morning of surgery. I had a better Endo than you though, who had decided surgery was the only answer, even before sestamibi and ultrasound showed an adenoma and it was the surgeon who needed convincing. 

I think that it would be a good idea if you could seek a second opinion, maybe at a different hospital if this is at all possible. I'm not going to say this would provide all the answers you want but your current medics aren't apparently seeing the whole picture. It would be great for you if you had someone who could interpret your blood results in a more appropriate way than at the moment. I wish you all the best.

Love and hugs 

Brigitte xxxx

Hi Mel,

Really sorry things have not been going well for you. I definitely agree with everyone that you need to sack your current endiots and get a second opinion from someone who actually knows something about phpt. You do not have vitamin D deficiency, you have hypercalcemia caused by primary hyperparathyroidism which is increasing your vit D metabolism (although over 50 is actually classed as normal in the UK so technically you aren't even insufficient let alone deficient)

If you do see them again I would point them towards the very well established fact that 80% of patients with PRIMARY hpt have low vit D (and increased vit D metabolism) as set out in this article by Dr Norman here.

http://parathyroid.com/CA%20PTH%20VTD%20PHPT%20NORMOGRAMS%2010000%20PATIENTS.pdf

I wouldn't mention DR N or America it will only put their backs up, just give them the article and point  out the sample size is 10,000 patients (far and away the biggest group of any hpt research ever) and also the diagnosis of pHPT was surgically proven in all cases.

So the million dollar question for them is - patients with both primary and secondary hpt can present with high pth and low vitamin D - how do you tell the difference? If your doctors correctly say in pHPT your calcium is high and in sHPT it isn't high, then go ahead and wave your Ca results at them. If they can't tell you the correct answer then definitely sack them.

If they try to point towards studies which suggest you can treat pHPT patients with vit D without raising calcium, ask how many subjects left the study early because they couldn't cope with the side effects? (Usually quite a few). Also whilst the serum Ca levels might not have increased significantly I have yet to find any study which looked at the effect on symptoms/quality of life. Finally and most importantly no amount of vit D is ever going to remove an adenoma from your neck. 

I know from experience how difficult it is to get doctors to listen to you, if there is anything we can do to help let us know. I think we might have to have a patient advocate scheme where you can hire an post-phpt patient who's free from brain fog to come and speak to your doctors at appointments. I would personally love to see the look on my endiots faces when they say stuff like 'you can't have phpt unless your Ca is over 2.6' and the person next to me says actually I did, and here's the scar to prove it.

Love
Dee
xxx

Mel, I posted all of my pre-op lab results here on the forum. Feel free to print my list and show it to your doctors. Let them know I had 2 tumors removed. I am living proof that you don't need extremely high calcium or PTH to have hyperparathyroidism. If the PTH is inappropriately high for the calcium level, you have the disease. Heck, even goats and monkeys (as Dr. Norman calls them) should be able to pick up on YOUR levels, and if they can't, it's time to move on to someone who can.

Audrey

Thank you everyone for your replies.
 
I`ve collected my latest blood report which states the following: Serum calcium 2.71 (2.2 - 2.6) adjusted calcium 2.74 (2.2 - 2.6) serum albumin levels 41 (35 - 50) parathyroid 32 (15 - 65) and vit d 61 (50 - 144) 

The receptionist must of read the report wrong when I asked for the adjusted and gave me the serum calcium.  Along with the parathyroid results it states that PTH results equivocal. Neither clearly suppressed or in range expected with primary hyperparathyroidism. 

I have emailed these results to RH and await his response.  

All the information posted is very helpful which I will take to my next appointment. Yes it would be great to hire an post phpt patient who is clear from brain fog, what a wonderful idea. 

Thanks again everyone x